Unexpected Expenses

Things to consider as you’re working on recovery

Amy Edmunds, Founder & CEO, YoungStroke, Inc.

Stroke in young adults can bring on money troubles that may be as challenging as the recovery itself.

“All patients, regardless of their insurance type, can have large medical expenses they are required to pay after their insurance has paid its portion,” said Erin Singleton, chief of mission delivery at the Patient Advocate Foundation (PAF). “Unlike other forms of debt, medical debt arises unexpectedly and is compounded by a decrease in income resulting from missed work either by themselves or those who act as a caregiver.”

With guidance, good choices for weathering stroke’s impact on your budget are possible. Here are some examples and guidance from others who’ve been there.


Meet Ann Marie and Rob

Hilton Head, South Carolina

Ann Marie, 50, awoke at 2:30 one morning last year to find her husband having an ischemic stroke. Rob, 51, had no history of high blood pressure or cholesterol and had always been physically active. His stroke was caused by a tear in his carotid artery. Rob’s stroke left him with aphasia and unable to walk. His long-term effects include limited speech and writing ability, foot drop and memory loss. He also lost use of his right arm. Rob had just finished his memoir before his stroke left him unable to write a complete sentence.

Previously, Rob had been an accomplished lieutenant aboard a nuclear submarine, followed by service at the Pentagon. More recently, he retired as a consultant for a management consulting firm.

Rob was semi-retired at the time of his stroke, but he and Ann Marie felt sure they were adequately insured to offset medical needs. They were sorely mistaken.

“I never imagined my insurance coverage would not pay for Rob to get better,” Ann Marie said. “When we purchased our medical coverage, I recall we were told that we would be covered 100 percent after paying our premiums and meeting the $5,200 deductible. Like many others, we didn’t think about rehabilitation.”

Rob needed more rehab than the 21 annual visits their insurance provided, and Ann Marie wanted him to have additional therapy. “How fortunate we are that I was previously a nurse,” Ann Marie said. “At least I have the confidence to seek resources and to research options.”

When combined with the cost of medications, durable medical equipment and in-home care, the cost of this extra therapy was significant. And Ann Marie and Rob aren’t taking care of just themselves. They also have a 20-year-old son, Eliot, at Clemson University and their 15-year-old daughter, Emily, is living at home.

They also have two adult sons who are financially independent. Based on their experience with Rob’s stroke, Ann Marie now encourages both sons to understand the specifics of the insurance coverage offered by their employers. “They believe they are invincible, when in fact, stroke happens now among young adults like my sons far too often,” said Ann Marie.

Couple Strategy

During a recent appointment, Rob’s doctor said that he would need extra therapy just to maintain his current level of function and that this would likely need to continue for years.

Ann Marie and Rob are now exploring a range of options to adapt their lifestyle to pay for this customized therapy.

Because of her work within the healthcare system, Anne Marie is a savvy consumer:

  • She insists that providers first bill her insurance company rather than initially paying for service and getting reimbursed.
  • She researches online for tools to enhance Rob’s independence.
  • She researches facilities to assess the quality of their staff, equipment and accreditations before making an appointment.

Shared Wisdom

“Suffering a stroke may be physically debilitating and may deplete personal savings,” said Ann Marie. “Take time to understand the medical insurance and disability coverage. Be sure the coverage includes the cost of rehabilitation.”

Meet Felisha and James

Houston, Texas

After six years as a widow, Felisha, 46, met James, 54, in 2013. For their first date, James flew from New York City to Houston to celebrate her birthday. Within a month, the two made plans to marry and buy a home for their family that included Felisha’s two teenagers — daughter Brandan, 17, and son William, 14, who quickly grew fond of James. But before they could exchange vows, James had a hemorrhagic stroke in February 2014. James had mismanaged his high blood pressure, which not only resulted in the stroke but also in reduced kidney function. His rehab services included dialysis until May, when his kidney function resumed.

After a two-month hospital stay, James went home unable to walk or perform basic personal care. However, after an accomplished career in entertainment, and the discipline necessary to earn a law degree, James was confident that he would recover. By October 2014, Felisha began to recognize the James she first met. But that was not to be the end of the story.

That December, James had a second hemorrhagic stroke brought on by medication he was taking for his first stroke.

This second stroke affected his right side as well as his vision and hearing. Interestingly, it also left him fluent in Spanish, which he hadn’t spoken since he was a teenager, and even then, only conversationally.

With the assistance of her children, Felisha provides all of James’s personal care needs, which include bathing, toileting and walking. Felisha also struggles with her own medical challenges. She has chronic fibromyalgia, which frequently causes her so much pain that she is confined to bed for days at a time. When this happens, she relies on her son to care for James. To help James control his blood pressure, Felisha searches online for sodium-free recipes. “The stroke is not who he is,” Felisha said. “We believe James will recover and our family is sticking together.”

Couple Strategy

“I am terrible at budgeting,” Felisha said, “but I did start a budget with the cost of therapy, medicine and healthcare incidentals.” Felisha and James also explored options for extended therapy and selected weekly deep tissue massage.

“That has helped James tremendously,” she said. They are also considering complementary treatments such as acupuncture, chiropractic and pool therapy, which may or may not be covered by insurance.

Shared Wisdom

“Be creative when seeking help,” Felisha said. “Ask other people who have similar problems, research online and explore stroke survivor assistance. Prepare for therapy costs, because it’s a long-term need. Also, ask for more therapy. It doesn’t always work, but don’t give up.”

As these two families demonstrate, post-stroke expenses may be difficult to absorb. Key budget items should include healthcare costs, therapy and medications. Ultimately, difficult choices may be required to balance recovery needs and ongoing expenses.

This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.

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